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Chronic Pain

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

As you are all aware, I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) and with that, comes a great deal of physical (and mental!) pain.

Pain rules my life and I have to live around it; I have spent many years trying many different pain medications with varying results.

When I came back from a three week pain rehab programme, I asked my GP to prescribe Fentanyl Patches. He agreed and I went away with a script for 12.5mcg (micrograms) and that’s where it all started.

I have been a regular codeine taker and it works well for me. I have never felt the need to take it, I only took it when I needed it for pain – so I was not addicted.

However, when using Fentanyl I quickly found that the 12.5mcg patch lost its effectiveness after only a few weeks and I titrated up to 25mcg.

25mcg in the grand scheme of things isn’t a massive dose. Yes, Fentanyl is 3 times stronger than Morphine but it’s still a relatively low dose. I was replacing my 25mcg patches every 72 hours and plodded along for a good 8 months. For around the last 6 months I have been dealing with hot flushes as a side effect of the Fentanyl and it became unbearable.

I needed to come off the Fentanyl and find an alternative painkiller. Little did I know that I had become tolerant to the medication so having weaned myself quickly from 25mcg to a 12mcg patch and then cold turkey, I started the long, painful and exhausting journey of withdrawal.

I am 5 days into full on opioid withdrawal and it’s hell on Earth. I have suffered with insomnia, cold sweats, restless leg syndrome, shivering, sneezing, coughing, diarrhoea, stomach pain, anxiety and fatigue.

The absolute worst time is at night when trying to sleep. I have gone through every single pair of pyjamas I own and they were all soaked through. I’ve had to change my bedding several times. I have slept roughly 3 hours the first night, 4 hours the second night, 3 hours the third night and so on.

I have read so much on withdrawal methods and I decided not to go down the Benadryl route (for the sweats and chills) as it is known to make restless legs worse in some people – and I’ve had enough stress to deal with.

I’ve just got back from seeing my GP who has given me a script for Beta Blockers, to help calm the anxiety and the night sweats. When your body needs to heal, it needs sleep – and if you’re dithering and sweating, you’re not sleeping well and you’re not healing; so I’m looking forward to a small amount of respite and hopefully more than a few hours sleep interrupted by having to strip off my sodden pyjamas and sleep naked (which I hate!).

As with most things in life; it’s a process. I’m stubborn and I’ve taken the ‘fuck it’ route and gone pretty much cold turkey after just a week of weaning. I wanted to get it over and done with. I’ve got what I asked for and I’m paying for it.

So, yeah, that’s a brief description of my latest health problems. This is just another part of chronic illness that people just don’t hear about. I hope it reaches someone who has judged another without knowing all the facts.

It’s been two weeks (I think!) since I gave my room key back to the Mercure reception and said goodbye to my new friends and goodbye to the room that had been my own little bit of heaven for the last three weeks.

I knew I wouldn’t be able to keep up with writing the blog during the three week programme, so I thought I’d give it some time and come back to the blog with a fresh perspective of the last few weeks…

The Pain Management & Rehabilitation programme run by Stanmore was an experience unlike any other. The first question the Psychologist asked me in my first one to one session was about my expectations. I had absolutely no idea what my expectations were because I knew so little about what the programme actually entailed. I’d had a brief powerpoint presentation at the pre-assessment and it was so vague I really didn’t know what to expect.

One thing in particular I didn’t expect, was to meet such an incredible group of women. There were 7 of us originally, but one lady left after the first night due to her being scheduled for surgery, so we were then down to 6 ladies (or patients, as they call us – which was strange as we were all staying in the hotel, rather than patients on a ward).

I have never met such an interesting, diverse and strong group of women in my life – the most amazing part of the course was spending time with a collective of women who all shared the same ‘secret’ – we’re all in pain.

Pain is such a funny topic. There isn’t a single person in the world who doesn’t know what pain feels like, yet there isn’t a single person in the world who knows what YOUR pain feels like – and that’s rather extraordinary, if you think about it.

Living in constant pain is horrible, it just is. But, when you meet other people who also live in constant pain, something happens. Personally, I found compassion (that I didn’t know I had) and empathy (again, another emotion I struggle to access) in bounds, not only coming from myself, but I also recognised it in them too. One grimace on my face and they knew instantly I was in pain. It’s a wonderfully comforting experience.

The programme ran from Monday morning to Friday afternoon for 3 consecutive weeks and all but one ‘session’ was based at the hotel. We were all given rooms close to the St Andrews and Cambridge suites that were used for the theory based seminars and the Physiotherapy and Occupational Therapy sessions. We were all given timetables at the start of each week with all our sessions mapped out for the week ahead.

The first week started relatively slowly and then the second and third weeks were busier, as we’d become more accustomed to the routine of the programme.

There were a few issues with the programme, mainly to do with the hotel itself – the hotel pool (which we had access to during the whole programme) had heating problems and so we had to miss out on a couple of hydrotherapy sessions – 26 degrees wasn’t pleasant.

The other issue was with the kitchen – the programme is on a full board basis so all food was included, but the kitchen staff weren’t exactly happy (or knowledgeable enough) to deal with two of the ladies’ dietary requirements (gluten free / low FODMAP diet) and it was a traumatic event every night trying to get them fed.
I wasn’t too happy eating from one restaurant menu for the whole three weeks – there are only so many falafel burgers you can eat before you get sick of them and only so many portions of chips you can eat for lunch before you start to pile on the pounds!

The programme itself has been a huge help to me personally, although I had already set up a lot of my own coping mechanisms in the 10 years since I was diagnosed. For example, relaxation and meditation were already a large part of my life so I felt like a few times it was a bit of a ‘teaching a granny to suck eggs’ situation, especially during the ‘nutrition’ session, but I realise I’m probably in the minority and that a lot of people will really benefit from what the course has to offer.

The occupational therapy sessions were interesting but I wouldn’t say all that helpful for me personally. Firstly, I don’t cook (I hate cooking and I’m lucky that my partner cooks for us!) so there wasn’t much they could teach me in that respect. I can’t hold a pen or pencil so the mindful colouring session was a bit of a miss too, but some of the other ladies found it really helpful.

The first OT I had (we were given a different OT after the first week, which was great!) wanted to change my sleep routine but I was assertive in that I was happy with the routine I currently have and would rather focus on other potentially ‘unhealthier’ parts of my life to change.

I will stress that the buzzword for this programme would be ‘change’. I have no problems with change (I get bored easily) but there are some things I’m not willing to compromise on and sleep is one of them. I’m sitting here writing this blog at 2am and that’s just how I work; my creativity hits a peak at this time and that’s just how it is.
If I was to have a 9-5 job, my routine would change and I’d suck it up, but I cannot work and therefore I have the luxury of living to my own rhythm, not society’s. (End rant!)

Another big aspect of the programme is learning about pacing. You’ll hear the term ‘pacing’ a lot if you join chronic pain groups on social media, but hearing about it and then being taught how to do it, is another thing entirely!

Pacing is where you work out how much of an activity you can do, and then changing your position (or stretching, or changing how you carry out that activity) so that you interrupt the pain before it hits you. I had already started pacing some activities before I started the programme. For example, my partner carries a fold out stool with us when we go on holiday or go to a castle or historical house. I make sure I have something to sit on at regular (or sometimes random) intervals so that I don’t get exhausted too quickly. It means then, that I have more energy to do more/see more.

One thing about the programme I will rave about is the physiotherapy. Before starting the programme I was most excited to get the chance to work with a physiotherapist who knows about Ehlers-Danlos Syndrome as I have had such terrible experiences with physio over the years. I was right to be excited, as the physio I was appointed was fantastic. She was so knowledgeable and personable and I felt really comfortable with her. We discussed my current problem areas (shoulder and lower/mid back) and my love for yoga and pilates (and how I struggle to exercise during a flare-up) and we created a yogalates routine I can do every day as my physio, which incorporates both my shoulder and back problems. I’ve been able to do my physio every day since finishing the programme (thanks to having an enjoyable physio routine and partner who reminds me to do them every day!)

It’s been two ish weeks since the programme finished and life has gone back to ‘normal’ – I am still struggling to pace some activities that I do most – like using my laptop and watching TV and DVDs on my laptop, but I’m sure in time and with practise, it’ll get easier.

The weirdest thing is not having the other ladies around. I say ladies, I mean friends. I truly feel honored and blessed to have been put on the programme with each and every single one of them.

A wonderful thing happened to me last night.
I received this comment from one of my followers on Instagram…

….in response to this image I posted to my Instagram account last night. I was feeling bummed about how ugly disability aids are – my wrist splints (worn most nights) are a hideous shade of ‘nude’ and are really really ugly…

I’ve written briefly about my hidden illness before. I don’t often post images of myself when I’m having a flare up, but if on the rare occasions I do, I get this sort of response from just one person, it makes the pain of living with my condition, so much more worth it.

Here is my message to the world:

You may see me on Instagram with a full face of makeup on, my hair clean, nails done… but what you don’t see is how I feel once I’ve done all of that, or on the many days in a week where I physically cannot do any of that – which is why I posted this image above. To remind everyone that we’re all human and sometimes, we just need support – physically and mentally.

I’m sat right now wearing yoga pants, a hoody and a dressing gown with my hair scraped into a bun. I have no makeup on and I’m in a lot of pain all over my body but the comment above has brought a real smile to my face.

So thank you, Shewolfcollective, thank you for recognising my struggle and thank you for your kind words.

You cannot change someone or will them to grow up. People change with age, they mature at their own rate. You cannot expect to change someone for your own happiness; living on the hope that they will change enough for you to accept them is futile.

Let people grow at their own rate and let them GO if they are not growing at a rate that is compatible to your own life and goals. It hurts, I know. But you have to let people be who they are.

Now I’ve got that out in the open and no one has died, let me tell you
why I’ve said this dirty word… well, because I am myself, disabled. Now, I know, I don’t look it, do I? Well, that’s your first lesson, I won’t dwell, let’s move on.

Next, I’m going to (brieflyish) explain what this means for me, personally.

I was 19 when I was diagnosed with a genetic, degenerative, multi-systemic, connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. This is also known as ‘Hypermobility syndrome’ or simply ‘EDS’.

A connective tissue disorder is caused when the body doesn’t naturally create enough collagen throughout the body. This means that my muscles, ligaments and other connective tissues are very bendy, stretchy and unable to hold themselves together properly; I’ve sprained pretty much every body part you can sprain and I live on very strong painkillers because of the chronic pain you get all over your body. I’m also on anti-depressants because, well, life isn’t exactly great having to deal with being in pain all the time!

EDS also affects my skin – it’s very stretchy and I bruise like a peach! EDS affects my eyesight – I have to wear glasses because my eyesight really sucks. It affects my central nervous system so I end up with blood pooling in my legs and making me dizzy when I stand up (Postural Orthostatic Tachycardia Syndrome), I wear orthotic insoles in my shoes because I don’t have strong enough arches. EDS affects me in many, many ways and one of the hardest things to deal with is the constant fatigue of having to work so hard to keep your body together. It’s a constant battle.

The crazy thing about all of this, is that apart from my rather gorgeous glasses (will blog about them soon) you cannot see that all this is happening to me. I do not use a wheelchair (yet) and I hide my wrist splints underneath fingerless gloves. I hate wearing my finger splints so only wear them at home. I have a telescopic walking stick that I hide in my handbag and carry enough painkillers on me to kill an elephant!

Now, I’m not looking for a pity party, or praise, or anything really. I just want to share this with you because people don’t like talking about things like this. Well, tough shit, I just did!

So, when you see someone climbing out of their car that’s parked in a disabled bay, think twice before tutting. Think twice before judging – you do not know what is going on underneath the surface.

Unless, of course, they are actually just selfish arseholes parking in a disabled bay without a disabled badge – in that case, feel free to tut away!